Hate to break it to you, but the OP's edited comment is far less harmful than yours.

I've been suffering from a myriad of symptoms that happen to match up with Segawa's... a disease I learned about less than ten minutes ago.

> please don't write them

Please don't make statements requesting that other's don't share their experiences with misdiagnosis and rare conditions. It's rude and furthers the stigma that some conditions are too rare for their sufferers to discuss.

> Hate to break it to you, but the OP's edited comment is far less harmful than yours.

It has been significantly, damned near whole cloth, edited in several ways since I said something, so I'd ask a little consideration that I'm coming from a good place. I'm not asking for anyone to avoid discussing Segawa's; I'm specifically responding to the speculation, across multiple comments, that the common element of dopamine as a neurotransmitter makes them related diseases. Given that people attack doctors when they try to arrest harmful discussion like this, I'm taking great pains to not be rude, so I apologize for coming across that way.

If you diagnosed yourself with Segawa's based on Wikipedia, please bear in mind that my single diagnosis across my entire career involved four months of differential diagnosis and observation, and led to a publication. It's simply that rare. There are several much more common possibilities, and I'd ask you to talk with your neurologist with an open mind rather than assuming the Internet has steered you correctly. That's also part of the reason I've responded as I have, exactly due to what you're saying.

It has not been edited near whole cloth. I added two sentences and modified two others. I think I've been very understanding of your skepticism, but at this point you're literally making stuff up.

Appreciate the comment and was unaware that it had been edited after your second comment.

I won't be diagnosing myself off of Wikipedia, next to no one in my family has the symptoms that I do so I doubt it's something like Segawa's.

I appreciate the apology and hope my reply didn't come off as too aggressive. Part of my tone comes from personal experience: doctors stating that I don't have a condition because it would be "statistically unlikely"... all without running a single test.

It was edited after their second comment, but they are exaggerating how much it was edited.

I added the first italicized sentence after their first comment, and after their second comment added the second italicized sentence and modified two other non-italicized sentences. I think... I may have just modified one non-italicized sentence after their second comment.

I am not a doctor and I did not diagnose them with anything. I stated that what they described sounded very similar (nearly identical) to my experience, initially with ADHD and then with DRD. I have updated the initial post with clarifying statements.

I don't intend to mislead anyone. However, I do want people to be aware of possible links between ADHD and other disorders so that they can evaluate their own situation and seek medical care if they would like to.

More to the point, my family has been misdiagnosed for decades, and this likely would have been avoided if we were more aware of other possible diagnoses.

If you have any specific edits you want me to make, please post them and I will include them.

My answer to that question will come across snarky or "the medical profession appealing to authority," I'm afraid, because I'd like to see your remarks entirely removed as medically harmful. Your purpose is clear from your other, more to the point remark: if only it had been for a random HN commenter who's never been to medical school speculating about two entirely unrelated diseases based on the presence of a common hormone, you might have avoided the diagnostic history and pain in your family that you report. That's a ridiculous position, both interpersonally as well as scientifically, but I know that engaging on it with you will look like I'm trying to steer people to my field rather than encouraging independent research of our discipline.

I'm here because I'm learning to write software, but I wouldn't pretend to understand the paper or mathematic theory behind, say, Paxos because I recognize some terms in it. I know my limitations, and all I ask is that you consider them, as well. The problem with raising awareness as you are is that it's difficult to objectively remove yourself: Segawa's is _incredibly_ rare, making all of the events in your family difficult to explain. Scientifically, transferring your experiences to others is a very tall order without much further study (and I hope you, and your family, are being studied, specifically because the genetics of Segawa's are poorly understood). What people portray as medical professionals swinging the hammer on "the information that could make us irrelevant" is actually trying to stand fast to the exact same scientific discipline that you, and every member of this audience, does in _every single other context_.

Your speculation about the relationship between ADHD and Segawa's is so far off base that a second-year medical student could probably explain why; you just happen to have been diagnosed with both. Left unspoken: it is quite possible to have both, because they present and manifest in different ways.

I'm happy to modify the portions of my post you think are medically harmful. I could be wrong, and I've been wrong before. But at the same time you could be wrong, and I think you are relying a bit much on appeals to authority. Just my opinion of course. I also wouldn't sell yourself short about making contributions to other fields. If you're wrong, you're wrong, but let someone else tell you that. I had to dig around and look real hard to even begin to figure out what was going on with my grandmother and ultimately my family. I was wrong a few times along the way, but we were able to figure it out.

My guess is that DRD is under diagnosed because of reduced or low penetrance in some cases. As far as I can tell, for the majority of our lives, no single person in my immediate family would fit the diagnoses, but as a family, we apparently do, especially if someone knows where to look and what to look for. I suspect my extended family on my grandma's side has it as well, but I doubt any family with it would be diagnosed unless they happened to have someone who presented with it in an obvious way.

The urgency you're detecting in my posts is because in my experience, 10+ doctors and 4 neurologists missed it and/or mistook it for other diseases. It was especially hazardous for my grandmother because they were insisting on doing the medical version of taking her out back and shooting her even though their treatment of her in medical and custodial care settings was causing the very symptoms they claimed were due to other disorders. And yes, I do not want someone else to go through that, especially since having other relatives who also respond to carbo/levo seems to be critical in helping establish a diagnosis when there isn't someone in the family who presents in a typical way.

If you want, I can modify my post, but like I said before, I strongly suspect the presentation of ADHD with other characteristics, which are admittedly not symptoms of either disorder, increases the odds that someone has DRD or some other neurological disorder that's also contributing to the presentation of their ADHD.

If you have some compelling evidence that there is no interaction between DRD or similar and ADHD, I'm happy to see it, but from personal experience that is not the case.